A good lesson for my faith...

I believe we are on the earth to grow and learn and come as close as we can to our full potential. My logical, rational mind knows this is best achieved as we are tried and tested through the circumstances we encounter in life. I know it is in the refiner's fire that we are stretched and polished and that this is the only way it can be. I do know it, and when I am thinking logically, or rationally, or more in tune with the spirit than I was earlier today, I feel it deeply within me. And in those moments, truly, I am thankful for the refiner's fire, because really I do want to be better and I do want to grow and progress.

Sometimes though, I'll admit, I feel nothing but exhaustion. Physically, emotionally, and mentally. And if my own exhaustion wasn't enough, I watch it on the faces of my husband and children. I see that I am powerless to intervene in circumstances of life; that trials that affect me are not mine alone to bear, as I would much prefer. I find it difficult to see it in my children especially. I wish that worry, fear, fatigue, trial, frustration, loneliness, uncertainty and pain were not a part of their life, but then not really, because I want them to have the opportunity to grow and learn as well. It is a struggle for me though, it's true, I wish life was a little less complicated for my little ones and there was more time for them to just be kids. I wish there was more I could do to ensure they won't grow up to be victims of their surroundings but rather the strong, independent, faithful, wonderful people I know them to be.

Maybe I just need more faith all around: faith in them, faith in myself, and most importantly, faith in Heavenly Father and the Atonement of Jesus Christ. But I am not perfect, and some days I struggle. That is when I need, more than any other time, to cling to what I know and the miracles I've seen, to my family and dear friends, and to remember, as the song says to "count my many blessings".

Here's an update from Monday and Tuesday of this week:

Monday Joc & Aimee went to the dr. Jocelyn had a test showing her bladder reflux is much worse than it had been (we'd hoped she'd grow out of it) and Aimee's been struggling too. Aimee is going to have a test on Friday to see where her condition is and we are preparing for Joc to have a reconstructive surgery in the very near future.

Tuesday Ben met with his cardiologists, then the dietician (who says he needs to gain some serious weight in the next two weeks or we're going back to the NG feeding tube), then we met his new oncologist. I knew we had the appointment to meet the oncologist but I guess I was a little oblivious or unclear why. I didn't feel I'd heard a clear diagnosis for Ben from the cardiologists, so I wasn't sure what we were dealing with. Well I heard it loud and clear on Tuesday, and if I'd been sitting I'd have fallen off my chair. PTLD, Post-Transplant Lymphoproliferative Disease. It's a form of lymphoma, basically cancer of the immune system. All the time I thought we were just meeting the oncologist to answer my questions or in case it ever turned into that. Actually, it was our first "Cancer Clinic" day. What a shock! I was a long day beginning before 8am at the hospital and we didn't get home til about 6pm. But I did get my questions answered, they weren't all the answers I wanted to hear, but that's ok. At least I know where we stand and what's going on. The more information for me the better. Even statistics (which are frightening!), but I do agree with my sweet and patient friend Staci, who knows Ben so well. She was cheering me up tonight and reminded me, that when it comes to Ben, statistics are just made to be broken. There truly has been no holding him back before and we can only hope for the same with this new challenge. I mean why not, if it's Heavenly Father's will that Ben sticks around for a while longer, then that's what will happen. And you wouldn't hear me complain, I love our little guy!

I'll try to post more when I can. I know I'm not very diligent at it, but just know we are still here and have taken the advice my mom used to tell me when I was a girl-- "Just keep on keepin' on". For right now, that's all we can do.

Update, well what little info we have...

Ok, where do I start? I guess I want to thank everyone who's been fasting and praying for Ben. I am sorry I didn't have time to post last night that we were doing a big fast for him today. If you are interested and didn't know about it, feel free to pick another day this weekend to fast and pray for him. We appreciate your faith, prayers and support so much!

So, long story but.... Ben has been sick since last May. Of and on fevers and times where he was so, so bad, (ER visits & hospitalizations), but mostly just really bad sinus/cold sxs that wouldn't quit. ENT tried everything they could think of and finally he had a CT of sinuses in January. It showed they were badly diseased. Surgery was scheduled and took place Feb 16, last Wednesday. Ben had a super major sinus surgery as well as having his adenoids out and tubes put in his ears. The surgeon said the sinuses were much worse than he thought and there were several parts he couldn't reach to scrape the bone down. He did the best he could. Also the adenoids were large so they were sent to pathology for tests. Recovery from the surgery was hard and Ben was not able to get off oxygen. So he was admitted where he stayed till Sunday. There were way scary times where he would de-sat to the 50's in an instant and spike fevers 104's. He'd gotten an infection while being in the hospital. But he did come home and has been doing ok. Getting more like himself though still sick.

Last night the lead Transplant Cardiologist called me herself. I knew something was up when she asked if I was driving, she said she needed to talk to me and didn't want me to freak out. (Like I am prone to that, right?) Anyway, I guess initial tests on the adenoids in pathology seemed ok-ish, but when they were looking at the tissues under the microscope it really didn't look good and so they ran tests. It was positive for one of two things (unfortunately this test isn't very conclusive). Posttransplant Lymphoproliferative Disease (PTLD) or Ebstein-Barr Virus (EBV), the first is essentially lymphoma, cancer. The second is also known as what causes mononucleosis (just imagine a tiny, immunosuppressed kid trying to fight mono!) but it also usually causes PTLD anyway. Here is some information about it if you care to read, it is lengthy but interesting if you like medical terminolgy.

http://emedicine.medscape.com/article/431364-print

I took Ben down today for a bunch of tests- a full body CT scan and abdomen ultrasound to see how advanced the condition is, (is it only near the adenoid region or all over his body, how the lymphnodes look and the size of his spleen and liver, all indicators of severity), as well as lots of blood tests to try to determine if it is PTLD or EBV. We won't get the blood results till maybe Monday or Tuesday (something to stew and worry about all weekend), but unfortunately the radiology tests showed enlarged lymphnodes all over his body, so what ever he has, he has it all over, not just where his adenoids were. I haven't heard what the spleen/liver looked like. Dr Everitt had me feel with my fingers enlarged lymphnodes she found in his groin, under his arms and his neck. I am to check them daily to see if they are getting bigger. For now his anti-rejection meds were decreased, in an effort to let his own immune system try to fight this. Danger there of course is his immune system could realize he has someone else's heart inside him and reject and attack it. Danger if you don't decrease meds is the infection will ruin the heart anyway.

At this point, none of the options sound good. We are trying to be hopeful, he really looks the same as usual (usual for Ben that is), and we have faith that what ever happens will be the Lord's will and for the best. Please keep Benny in your prayers. Thanks!

Please say a prayer today

Please keep Ben in your prayers today if you're able. He's having a pretty major surgery, not heart related, but still scary. No time to update right now, will try to soon... Thanks!

Mom's helpers...

This is a random post that I've been thinking about for a long time. When Sarah was born, I'll admit it, I was terrified. After Ben, something happened to me, emotionally and mentally and I just am not capable of handling as much as I used to. I get overwhelmed much easier it seems and feel discouraged with myself a lot. Add to that, Sarah was SO colicky for the first 4 1/2 months of her life and hardly spent a moment not SCREAMING. I joked that she just knew she was the fourth child and had to speak up to be heard, but inside I was going crazy! She cried all day and ALL night. She rarely slept! It was a hard time mostly because I was too prideful to ask for help when I was too exhausted to keep going. So I kept going. I was finally shaken into the reality that I needed help when something horrible happened. Ben suffered a terrible, really, really terrible burn. The kids were almost late for school. I had to have myself and the babies ready too because Ben had a dr appointment right after I dropped the girls off. Everyone was ready and waiting by the door as Aimee read a story to the little ones. I ran upstairs to brush my teeth (the last of my personal hygiene rituals I hadn't yet given up on). I had had the flat iron straightener turned off and cooling behind the bathroom sink. I moved it so I wouldn't shock myself while I brushed my teeth. I never heard Ben come in. He is so quiet. I didn't even hear him screaming because he is literally silent when he cries most of the time. I just happened to lift my head up and see out of the corner of my eye his whole hand was grasped tightly in the inside of the flat iron and he wasn't letting go. He was screaming in agony but wasn't making a sound. I'll never forget the look of terror and pain on his face. He suffered really bad third degree burns on the outside of his hand and wrist area and the whole inside of his palm. I panicked, cried, immediately took him to the closest urgent care place. The doctor worried me when he walked in and the first thing he said was he was going to go call the plastic surgeon at primary children's. What?! Could this really be happening? After all Ben has been through, I must truly be the worst parent to ever live! It was the breaking point. He has suffered so much because of that burn and I won't ever forgive myself for that. We have been going to the Burn Unit at the University of Utah since then and his hand has improved so much. He didn't loose mobility like they were concerned he would. (I did try to be perfect in taking care of it just the way they taught me to and did his physical therapy all the time.) He didn't end up having the skin graft we'd planned for either, thanks to a priesthood blessing. It really looks so much better though we still get lots of comments about it. Oh man, I can't tell you the agony I have felt for this one! But like I said, it was a blessing in a giant disguise. Because I think something was bound to happen sooner or later. When I look back I sometimes wonder if Ben's burn didn't actually prevent something more tragic, like me falling asleep at the wheel and killing all my babies in a car accident. That kind of stuff happens, and I am so thankful we were blessed and carried through that time. Anyway, to get to what I wanted to write about, finally!... After that I decided I needed help around the house and with everything really. I was a basket-case I think and so everyone had to start sharing the load a bit. Here are a few fun pictures I found of the help I received from my kids. Cody helped a lot too, he always has been a great help, I just never take pictures of it. (No one wants blackmail lying around!) The best thing about the kids helping though is that so much of it was spontaneous! They just saw a need (there were lots!) and they helped and I am so proud of them!

This one is blurry, sorry, I only had a half second to grab the camera

when I walked into the kitchen and saw Ben sweeping the floor.

Whoever said child labor was a bad thing?

Here is Aimee letting Sarah eat her face off at the hotel in Disneyland.

Really this little distraction for Sarah is a huge help sometimes!

Ben had just learned to climb onto the couch by himself and what

did he want to do? Hold his sister! You can't see it in the picture but

he was actually trying to read her a book. Darling!

I love these two pictures! Aimee is at the perfect age for mommy-ing

and she loves having a baby sister to practice with. She is definitely

my go-to extra hands when it comes to holding the baby.

Look how cute they are!

At Jocelyn's birthday Ben was trying to help by feeding Sarah

some paper from the floor. Mmm, thanks Ben!

Aimee reading to Sarah.

Ben trying to get out a wipe he would later use to wipe Sarah's nose.

I thought that was pretty sweet.

Jocelyn holding Sarah's bottle while I herded all the kids

at Aimee's birthday party.See the way Sarah is looking at her?

This has to be one of my favorites. Joc woke me up one morning dressed

and sporting her apron with her doll on her hip. She'd gotten up early and

made breakfast for everyone and set the table so well. She is awesome!

Look at her "don't take my picture" expression! :)

Ben found a way to help Sarah stop screaming. He just lays his head

on her and she stops. It's comforting I guess. He has a new variation on

it now, he sits on her and says "Neigh", like a horse! Surprisingly she loves it!

She and Ben are so close and it's so fun to see them interact!

Aimee helping mom again, thanks Aim!

Jocelyn holding Sarah when she was tiny. Remember I had pneumonia

when I delivered Sarah, that's why she was early, so Joc would come lay

with her when I would be coughing too much to hold her. It was such a

help to me and I love Jocelyn's proud Big Sister expression!

She is truly the perfect Big Sister in every way.

My most favorite picture of all. I had to set screaming Sarah down for a

minute to change Ben's burn dressing. I was alarmed when I realized

she'd stopped crying and I was afraid she'd stopped breathing! But to

my amazement, I found Aimee holding her--Sarah was fast asleep, while

Aimee was intently reading a little "Meals on the Go" cookbook!

Oh what a little Mommy you'll be someday!

And finally, while it's true the mess in the background was Ben's doing,

I thought it was darling when he went all the way up to his room and

came back down with a little book and read it to Sarah.

He seemed irritated I'd interrupted though!

These are just a few of the countless times my sweet kids have saved me in a brief moment of insanity. How thankful I am for you Jocelyn and for you Aimee and for you Benny and for you little Sarah! I love my sweet babies!

(P.S. After looking at these cute pictures you probably can't understand why I was so stressed--not one picture shows Sarah as much as frowning, let alone screaming. Well what kind of parent takes a picture of their kid crying? Trust me, she DID!)

Hey everyone, thanks so much for the prayers for Ben! He had a really rough night but I haven't given any Tylenol since 5 am so maybe we've made it to the turning point. Also he drank 2 oz of water and ate a little bit of a string cheese. He is still sleeping a lot but if we can increase his hydration I think he'll be ok and not have to check in to our favorite hotel. :~)

Ben is sick :(

So I haven't really blogged about this and it's been going on for a long time it seems so I guess now is as good a time as any. In May, Ben got sick. Really sick. Basically what we would think of as bad cold symptoms, you know, cough, runny nose etc. but way, way worse. Because we suppress his immune system with medications anytime he gets sick he is so much worse off than someone with a normal immune system might be and it takes a really, really long time for him to get better. In fact, he isn't better yet! It's been six months with the same illness!!! We have seen lots of doctors and they have tried lots of different things. Then when they run out of ideas they refer us out to someone else. Sometimes he would have a few good days here and there and we were hopeful he was finally getting well. Unfortunately he would always take a bad turn. He was hospitalized at Primary's in August because he was having fevers in the high 103's that wouldn't come down no matter what and he was really dehydrated and so lethargic. He couldn't breath and was pulling in and working so hard. Miraculously IV fluids helped a ton and he was able to go home after only two days. But we just keep going around in this cycle and I really don't think he's ever quite gotten better. After hours at the dr's today (poor Sarah was buckled in her car seat from 8am to 3:30 pm with only 20 minutes that I could take her out and hold her the whole day!) and lots more tests the transplant team called tonight suggesting they admit him again. :( At that point he'd pretty much stopped eating and drinking completely and had only had one small diaper early this morning and none the rest of the day (I know, my last post was complaining about too many diarrhea diapers all over the place and now I'm complaining he's not having enough! Guess you just can't please me!). Another thing is he just wants to sleep, all the time! I know sickies need their rest, but he won't wake up! Also, he won't hardly talk or walk or do anything. Just wants to be held and sleep. I don't like it one bit. He is TINY. He is still in the same size clothes and shoes he wore last Christmas. He had lost more weight at the dr today and I just don't like it one bit. He doesn't have any reserve when he gets sick. Who would after being sick this long. I worry about my little guy. I thought, while soliciting my dear friends for your prayers for Benny, that I'd show you the few pictures I took in August when he was back in the hospital. He is darling and doesn't look nearly as sick in the pictures as he was in reality.

Here's Cody reading to Ben when he came up to visit. This book is a version of "I Know an Old Lady Who Swallowed a Fly" but it's "There Was a Coyote Who Swallowed a Flea". Cody bought it in Texas when he was on a trip. It's hysterical and all our kids love it.

Ben was trying so hard to look interested and not fall asleep!

The second day he ventured to try two fruit loops and one peach. Progress any way. Plus he was sitting in the high chair and not just wanting to be held.

He even gave a little smile.

He isn't smiling today. I have him sleeping right next to me so I can watch him closely. He did have a few bites of yogurt and a few sips of his water so we are going to watch him through the night. If he needs it, we will take him to the ER tonight. If he does well through the night we will call the docs in the morning and go from there. Say your prayers tonight, please. I sure love this little guy!

How many times do you think it's reasonable to bathe the same child everyday? Well if we're talking about Ben who is on lots of serious poo-producing medicines 2-3 baths a day are not only reasonable, they are ESSENTIAL! He seriously takes it to a whole new level of yuck! And the timing is always the worst. I love Ben tremendously, but can I just for one second vent- I am sick of being covered in poo, wiping and scrubbing out poo, doing extra laundry because of poo, and worrying about the next poo I'll discover! It's not the highlight of my day by far, but then Ben just smiles at me while I am cleaning him up and says in his cute scratchy voice "Mama, poo." and it makes me smile and forget the stress and suddenly I love him all the more!

I'm not sure why but I've been thinking lately how thankful I am for wonderful families who are such good influences on my kids. My little ones LOVE to be with grandparents, aunts and uncles, and cousins. Families are what life's all about, right? This is a random picture from Christmas 2009, when Brady was still waiting for his kidney transplant and was really ill. He is much better now but struggles with almost constant infections. We love him and hope he continues to gain strength.

One cute picture at a time...

I just had to share this photo. It was early in the summer this year and it totally makes me laugh. Aimee's lips are actually inside Sarah's mouth! Well they love each other. What can I say.

Ok, so I am way, way behind on posting but it isn't entirely my fault. We had to get a new computer a little bit ago and I am ashamed to admit it but I don't know how to use it, like at all! My sister even came over to show me the ropes and it is useless, and largely embarrassing. Further proof that I am officially old (as if the four kids and the minivan in the garage don't do that already)! All I can say is to offer my sincerest apologies to my devoted followers, both of you, and my hopes to be back in the swing of things in the near future. In the meantime, I've been reading this little book for the book club and have found it charming so far (I'm only about 20+ pages in though). So far it's a pleasant diversion.